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Thread: New Injury asking questions about pain

  1. #1

    New Injury asking questions about pain

    Hello All, I received this from a new injury I've been visiting. He's about 12 weeks post and has been laid up most of that time due to a pressure sore he got at Harborview in Seattle from not being turned while there. I have a few ideas but feel the community here would also be able to throw out some ideas. I'll send him this thread to follow with:

    Hi, Pat. I?m suffering from phantom or nerve pains that make me feel like my crotch and trunk are being crushed almost all the time, but especially after I?ve been sitting up. Sometimes it?s accompanied by leg and trunk muscle spasms. Have you dealt with anything like this? Know anyone in your network who has? The doctors have tried gabapenten and lyrica. No change. I?m getting desperate as it makes me miserable all day and night. Any guidance appreciated. Cheers.

  2. #2
    Well, first of all, tell him it is not "phantom" pain. That term should be reserved for a particular type of neuropathic pain that occurs in amputees. What he has is probably central neuropathic pain.

    How much gabapentin did they try? We often found that up to 4500 mg. daily was needed. Neither of those drugs is likely to make the pain go away; but they may reduce it to tolerable levels. Were other meds tried as well, such as Tegretol (Carbamazepine) or mexiletine hydrochloride? Elavil? I assume since he is still in the hospital that they cannot prescribe or provide medical marijuana.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  3. #3
    Thanks KLD, I'm surprised he would have those feeling so low being a t/6. Could it also be some of his muscle groups are coming out of shock after only 12 weeks post injury? He is VA eligible as well could go to any rehab facility around but I think his long stint in the hosp. laying in bed 24/7 has made it so he just wants to do rehab locally and be home with family.

    The hosp. tried placing him in an assisted living to finish healing up. The place was so bad he lasted a couple of hours there, called an ambulance and went home. I believe he has set up a program with visiting nurses etc. while home. I've been encouraging him to go to a specialized SCI rehab. facility. I certainly understand his reluctance after his experience with Harborview and their lack of SCI protocol turning a patient to avoid skin problems. They never found it while there; it was his wife who found it when he got home. God Bless the wives and husbands.

    I told him I was posting this thread so trust he'll read it here and may be able to answer those questions better than I. He's highly motivated and was in great shape at the time of his accident, mountain biking. I have little doubt he'll excel once he can get over this hump.
    Last edited by Patrick Madsen; 10-20-2018 at 02:15 AM.

  4. #4
    I would encourage him to go to the VA, even as an outpatient. He will be able to get much better DME there, and follow-up care through the SCI clinic with SCI expert physicians on-going. The PVA NSO for Seattle can help him with his eligibilty application and getting rated as Category 4.

    Radicular neuropathic pain usually does occur at or near the level of injury, but "below level of injury" neuropathic pain can occur anyplace below the level of injury. There is generally not a higher rate of this in incomplete vs. complete injuries.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  5. #5
    I see that this thread is about a month old but I wanted to add some encouragement for your friend to go to a specialized sci rehab. After my accident I was in the local hospital for a couple of weeks and it was awful. Thankfully and tragically, my family already had personal experience with sci, if not it would have been much worse for me. I was very very scared to go to a rehab hospital as it was a few hours from home and my family would not be there to keep me safe.

    I went to Spaulding in Boston and it was amazing. So much different than the regular hospital I had been in previously. Short of writing a story about my experience there, which is not the intent of this thread, all I can say is that my experience at Spaulding was amazing and I am so glad I went there. Just my experience but I'm pretty sure that any reputable sci rehab hospital is going to be in a different league than a regular hospital.

    -Isaac

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